Living with generalised pustular psoriasis: Kristina’s story

Living with generalised pustular psoriasis: Kristina’s story

Thanks to support from her friends and family, Kristina Siranjivi has managed to keep flare-ups of this rare skin disease at a manageable level.

Kristina Siranjivi has been living with generalised pustular psoriasis, a rare skin disease, since 2019. (Fauzi Yunus @ FMT Lifestyle)
PETALING JAYA:
Kristina Siranjivi has been suffering from psoriasis since she was 17. The soft-spoken former business administrator is calm as she remembers the painful symptoms she endured, including fevers, rashes, shivering, and redness all over her body.

Psoriasis is a chronic skin disease that causes a rash with itchy, scaly patches, most commonly on the knees, elbows, trunk and scalp. Patients often experience flare-ups – periods when their symptoms suddenly worsen – after being exposed to triggers such as stress, injury, or medical side effects.

In 2019, things took a turn for the worse as Kristina’s skin condition developed into generalised pustular psoriasis (GPP), a rarer and more severe form of the disease.

During flare-ups, she struggled to walk or perform simple tasks as her skin would be covered with fluid-filled bumps that caused intense pain, itching and burning. She couldn’t even wear any clothing as it would cause severe discomfort.

The agony would sometimes be so intense, she felt like taking her own life.

“I had to resign from my job because of GPP. I had flares very often, and I would have to take leave for at least two weeks every time they happened,” Kristina told FMT Lifestyle in conjunction with World Psoriasis Day today.

“It would take three months for my skin to grow back and for me to recover,” the 31-year-old said, adding that her flare-ups can be triggered by minor inflammations such as toothaches or headaches.

During flare-ups, Kristina would be covered in painful lumps all over her body. (Kristina Palaniandy pics)

According to Gleneagles Hospital Penang consultant dermatologist Dr Tan Wooi Chiang, approximately 0.02% of the Malaysian population were estimated to be living with GPP between 2010 and 2020.

This condition was noted to be more prevalent among females, and was particularly high among the Chinese.

“While plaque psoriasis – the most common form of this disease – presents with raised, red patches covered in silvery scales, GPP is characterised by widespread pustules filled with non-infectious pus on inflamed, red skin,” said Tan, who is also president of the Dermatological Society of Malaysia.

“The condition can be life-threatening if left untreated, due to potential complications such as infections or organ failure. GPP typically requires urgent medical attention, and treatments often include systemic medications aimed at controlling inflammation and preventing flare-ups.”

Thankfully, Kristina is doing much better today; thanks to new biologics treatment – which involve the administering, through an IV drip, of medicines made with living cells – her flares are a lot less frequent nowadays. She told FMT Lifestyle it has been six months since her last flare-up.

Dr Tan Wooi Chiang.

Most people, however, do not know much about psoriasis or GPP: Kristina recalls how many would react with unease upon learning of her condition, fearing it was contagious (it is not).

Still, she refrains from offering advice, believing sufferers have enough stress as it is. They “have to understand their own bodies, what they react to and what they don’t”, she noted, adding: “I am glad, though, that there are more efforts now to spread awareness on GPP.”

According to Tan, there are two current treatment protocols for GPP, namely non-pharmacological management – which primarily involves lifestyle modifications and supportive therapies – and medications.

“Systemic medications, such as biologics and immunosuppressants, are often prescribed to reduce inflammation and prevent future flares,” he explained.

“In addition, managing triggers such as stress, infections, and certain medications is crucial to reduce the frequency of flare-ups.”

Kristina with her husband Siranjivi Rajagopal, who has provided her with tremendous support. (Kristina Palaniandy pic)

Tan advises that patients should maintain regular check-ups to monitor the disease and adjust treatments as needed. “Early intervention during the onset of symptoms can help mitigate the severity of relapses,” he stressed.

Kristina is thankful to her friends and, especially, her husband and family members for helping her through challenging times. Indeed, Tan highlights that those who live with GPP sufferers should strive to show consistent love and support.

“Flares can be unpredictable, so reassure them it is fine if they need to cancel plans at the last minute,” he recommended.

Other ways of helping? “Offer to pick up their medication, give them a ride to the doctor, or provide other things they might need. Check in with them and affirm you are there to support them, and that they are not alone.”

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